Disability Studies Fieldwork_Jen Rinaldi

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Disability Studies Fieldwork: Does the NondisabledResearcher Belong?Jen RinaldiPhD Candidate in Critical Disabilities Studies, York University, Toronto, ON

In this article I investigate the complications that arise

when a researcher who does not identiy as having adisability engages in eldwork pertaining to disability.Disability studies is a discipline that has emerged inpart in response to mainstream eldwork that involvesthe study o disabled people but has not called or

their active participation (e.g. education and psychology). Ipresent the epistemological and political implications totheir historical exclusion rom eldwork. I also bring to lightthe inequalities and power dynamics that a nondisabledresearcher might encounter when studying disabled people.Where then, I ask, does that leave me as a supposedly

nondisabled researcher? What responsibilities does aresearcher have to sel-disclose, and at which point doesthe pressure to sel-disclose constitute a violation, inasmuchas disclosure in a context that still stigmatizes disabilitycould lead to loss o control over ones identity and privacy?

The category o disability itsel encompasses people withphysical disabilities, including wheelchair users and blindpersons; invisible disabilities such as learning disabilities andchemical sensitivities; linguistic minorities like Dea persons;and disabilities aecting mental state and intelligence. While

the category is broad and the disability community has itsown problematic internal hierarchies, all these sorts o peopleare subsumed under the title disabilitya political categorydened by the exclusion and disadvantage they all experience.

They are united in their experience o oppression, and in theirdierence, to the extent that they all deviate rom the physicaland mental states that are socially accepted as species-typical.

Disability studies encourages the active participation odisabled people in scholastic research, in large part as aresponse to current and historical research about disability.According to James I. Charlton, the power o a popular

slogan or disability activism nothing about us without us,derives rom its location o the source o many types o(disability) oppression and its simultaneous opposition tosuch oppression in the context o control and voice (1998:3).Disabled people have been systemically excluded rom ullparticipation in their communities due to physical barriersand social stigmas, and academia is no exception. Studieshave been conducted about disability, and have ocused onsubjects and populations who have disabilities. However,only recently, with the rise o disability studies, have we

Abstract

This article investigates the

complications that arise when

a researcher who does not

identiy as having a disability

engages in eldwork pertaining

to disability. Disability studies is

a discipline that has emerged in

part in response to mainstream

eldwork that involves the

study o disabled people but

has not called or their active

participation (e.g. education

and psychology). The author

presents the epistemological

and political implications to

their historical exclusion rom

eldwork. The author also

brings to light the inequalities

and power dynamics that a

nondisabled researcher might

encounter when studyingdisabled people. Where then,

does that leave a supposedly

nondisabled researcher?

What responsibilities does a

researcher have to sel-disclose,

and at which point does

the pressure to sel-disclose

constitute a violation, inasmuch

as disclosure in a context that

still stigmatizes disability could

lead to loss o control over onesidentity and privacy?

Keywords

Disability, disability studies,

eldwork, sel-disclosure,

knowledge-production

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particular meaning she attributed to it, isthe cornerstone o Barbara McClintocksentire approach to science. For her, thesmallest details provided the keys tothe larger whole. It was her convictionthat the closer her ocus, the greater

her attention to individual detail, to theunique characteristics o a single plant, asingle kernel, o a single chromosome, themore she could learn about the generalprinciples by which the maize plant asa whole was organized, the better hereeling or the organism (1983:101).

Keller describes McClintocks relationship withmaize in a romantic way, which calls into questionthe ideal in science o the detached observer.

Traditional methods o scientic inquiry might

not have led to McClintocks results. Longino(2002) and Keller (1983) hold that being a womanhelped McClintock nd this new method, sincewomen have been historically socialized to bemore empathetic and relationship-oriented. Thetwo scholars also argue that both being emale,and adopting an approach that incorporatesstrengths that are more traditionally associatedwith women, marginalized McClintock romthe scientic community until her discovery otransposition earned her recognition and prestige.

Just as the emale perspective McClintockdeveloped might yield dierent kinds o scienticmethods and discoveries, disabled people candraw rom their own experiences in order toshape the direction o eldwork. The exclusiono disabled people rom research may have thusobstructed the production o relevant, valuableknowledge about disability. When nondisabledresearchers ail to take into account input romdisabled persons when studying disability, they risk

basing and building their research on ignoranceand prejudice. Any assumption on the part o thenondisabled researcher that she/he knows betterthan the participant would be presumptuousand patronizing, but more than this, would beirresponsible insoar as the research producedmight be limited, inadequate, and even wrong.

Furthermore, there are political implicationsto silencing the voices o disabled people romresearch in that academic research can be used

seen disabled people conducting, designing,or taking part in the research, and serving inany other capacity besides as objects o study.

There are epistemological implications to theexclusion o disabled persons rom studiespertaining to disability. This minority groupmay have something new to oer that wouldurther research and produce dierent kinds oknowledge. To develop this argument, I will analyzethe implications to the exclusion o women romscientic inquiry, or women and disabled peopleshare (or have shared) common experiences omarginalization rom academic pursuits. MargaretAlic presents the history o emale scientists inHypatias Heritage: A History of Women in Sciencefrom Antiquity through the Nineteenth Century,arguing that their storiesthat is, their collectivecontributionshave largely been overlooked:Throughout history women scientists have beenignored, robbed o credit and orgotten (1986:10).

For eminist philosopher o science Helen E.Longino (2002), knowledge-productive processesare more social than we may realize, and weproduce new and dierent knowledge claimsonly by including the voices o all members o ourcommunity. In The Fate of Knowledge, she writes,not only must potentially dissenting voices not

be discounted; they must be cultivated (132). Sheargues that scientic inquiry has been stymiedinsoar as the voices o women have been silenced:their ndings have been ignored and they haveaced systemic barriers to ull participation inscientic inquiry. As a result, science, rom thisperspective, could only reect the ndings andinterests o a part o the community. I scienticpractice had incorporated people with dierentexperiences and perspectives in knowledgeproduction, it would have grown in new directions.

For example, Barbara McClintocks ndingsconcerning the genetic structure o maize wererevealed through an unorthodox method oinvestigation. She visualized chromosomalexchange via reproduction and discoveredtranspositiona discovery which would earn herthe title o the only woman to have received anunshared Nobel Prize or Physiology or Medicine.Says Evelyn Fox Keller on McClintocks research:

The word understanding and the26

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Playing the Field Conference Proceedings | Social Anthropology | York University 2009


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members o minority groups by scrutinizingthese individuals as objects o study. Theprocess o objectication can be demeaningand dehumanizing. When people being studiedare not given the opportunity to participate inthe shaping o eldwork conditions, such as

interview questions or data analysis, relevantquestions or themes might be disregarded,which can produce rustration, or no space ortalking about the real issues or the studied opensup. In this way, research can be silencing, or itmight not reect the experiences or opinionso those being studied. Moreover, researchparticipants might be aected when dealing witha nondisabled researcher who is not sensitiveto the needs and experiences that disabledpeople encounter. Even when a nondisabled

researcher is sensitive, her/his very presence as anondisabled body can be alienating. For instance,eldwork in critical atness studies or on topicsrelated to eating disorders might be conductedby a researcher who is thin and t, whichmight make it difcult or research participantsto share their experiences and eelings.

Disabled people have in various ways beensubject to systemic historical discrimination anddisempowerment; it is thereore important that thenondisabled researcher be mindul o the powerimbalance that might occur when conductingeldwork. The nondisabled researcher alreadyhas more privilege in contrast with disabledpersons and while carrying out research serves asa cognitive authority, thus having power in theeld. Sensitivity to or awareness o this imbalancemight result in the nondisabled researcher beingmore aware o accommodation issues (physicallyaccessible spaces or physically disabled people,plain language or intellectually disabledpeople, oral tests or learning disabled people,as examples) and less likely to be charitable ordemeaning, silencing or inappropriate. Also,such an imbalance might be redressed byinvolving participants in the eldwork, givingthem the opportunity to help shape and directthe research by, or instance, participating inthe development o the study questions andtaking part in the interpretation o the data.

I have outlined how nondisabled researchersshould conduct themselves in the disability

to legitimize unjust practices and reinorcestereotypes. In The Mismeasure of Man, StephenJay Gould (1996) recounts the history o scienticinquiry, arguing like Longino (2002) that scienceis a social enterprise. That is, science is rootedin context and oten involves the justication o

biases and the promotion o these justicationsas capital T Truth. Gould (1996) discusses thetests conducted in the 1800s to measure scullsin an eort to rank intelligence racially, basedon brain mass. This kind o research supportedand promoted racism, and served as justicationor public policy and social practices predicatedon the notion that racial ineriority existed (e.g.as cited in Gould (1996), the 1924 ImmigrationRestriction Act in the United States). As long asmarginalized groups are excluded rom academic

research, they lack intellectual authority, andresearchers who seek to establish and legitimizetheir own biases have the intellectual authorityto inorm public policy, social institutions, andeven just common attitudes and perceptions.

When disabled people are not given theopportunity to contribute to research aboutdisability, key issues that concern them might beoverlooked, and biases that should be redressedmight instead be given academic backing.John W. Cresswell (2003) discusses the value oemancipatory or participatory research, wherebymembers o marginalized groups take part inthe process and address research questionsthat are o interest to these groups: namely,questions about social justice and equality. Hischaracterization o the research method is relevantto the nondisabled researcher studying disability:

This research...assumes that the inquirerwill proceed collaboratively so as to noturther marginalize the participants as

a result o the inquiry. In this sense, theparticipants may help design questions,collect data, analyze inormation, or receiverewards or participating in the research.

The voice or the participants becomes aunited voice or reorm and change (10).

The eldwork itsel might be disabling i thenondisabled researcher, even unintentionally,objecties and alienates the disabled peoplebeing studied. Research can urther marginalize

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These generic, xed categories eectivelyeace the complexity o my personaland proessional lives. By that sametoken, the reviewer also assumed thatthe people I was working and socializingwith and I were mirror images (that

is, opposites) o each other, and thatour relationship could only have beendened by unequal power plays. (789).

When researchers choose not to positionthemselves in their research, they may bepositioned without their consent. Her reviewermade assumptions about her identity withoutactually knowing Robertson, and Robertsonwould hold that identity slippages transpired asshe engaged the participants o her ethnographicresearch. Identities are not ready to wear

(788) packages; that is, they are not essentialist,static categories, nor are they always readilyapparent. Reading the body without someonesconsent involves stereotyping. Beyond this,when alsely read as being privileged, a personmay be pressed into admitting to identitycharacteristics that have been grounds or stigmaand disadvantageidentity characteristicswhich may better serve a person hidden inexclusionary environments. When a researcherchooses not to sel-identiy, it may be that the

assumption that the researcher is privilegedmisrepresents the researcher and pushes theboundaries o the researchers right to privacy.

In the case o disability, a person may be disabledin a way that cannot be read on the body.Examples o invisible disabilities include learningdisabilities, chronic pain, chemical sensitivities,and madness. It is possible a researcher mightnot publicly sel-identiy as having a disability,but nevertheless has one. I, or instance, have

never been ormally diagnosed, but I can claimto have a number o identity characteristics thathave been or can be pathologized as indicatorso mental health problems. I do not typicallyidentiy my reasons or relating to the disabilitycommunity or ear o peoples perceptionso meo who I am, o even my strengthsbecoming disrupted, coloured, and simpliedaccording to ableist stereotypes. Veganism ceasesto be an impressive eat o sel-discipline and willpower when my history with eating disorders is

studies eld. Perhaps I should be asking,though, whether the nondisabled researchereven belongs in this eld. Given the intensityo the power imbalance between nondisabledresearchers and disabled research participants,perhaps it would be ideal i research pertaining to

disability only be conducted by disabled people.Furthermore, disabled people have actual stakesin the research results, vested interests in seeingthe research carried to its conclusions. Whatmight the nondisabled researchers interest indisability-related issues even be? Is it enoughto be interested in social justice and equality?Is there space in the eld or a nondisabledresearcher, just as there might be space ineminism or men? Or, is speaking on behalo a marginalized group always in some way

patronizing, despite the best intentions o beingempowering? It is perhaps the case that insteado treading lightly, the nondisabled researchershould nd another eld o study altogetherbecause by deault, her/his experiences andinterest are not enough to justiy being part o theeld. Questions like this are not new in the eldo anthropology, which has become increasinglysel-reective with respect to studies o thosewho are culturally dierent rom the researcher.

As a woman, I relate to disability studies, or I tooam a member o an historically disadvantagedand marginalized group whose bodies have beensubject to surveillance and control. However, byidentiying with disability studies insoar as I ama woman, I risk co-opting the stories o disabledpersons, then understanding those storiesaccording to my own paradigm rather thanbeing open and reexive to them. There mightbe a point at which I cannot relate because I havenot shared in the same kind o experience, notcompletely, only by analogy. Perhaps it is notenough that eminized bodies and disabled bodiesshare commonalities, or assuming the two setso experiences are identical might be silencing.

Jennier Robertson (2002) cautions againsttaking positionality as a condition o researcherreexivity too ar. In reaction to a reviewerasking her why she does not position herselin her writing as academic, white, Westerner,woman (789), Robertson argues the ollowing:

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Princeton University Press.

Keller, Evelyn Fox

1983 A Feeling or the Organism: The Lie and

Work o Barbara McClintock. San Francisco: W. H.

Freeman.

Robertson, Jennifer

2002 Reexivity Redux: A Pithy Polemic on

Positionality. Anthropological Quarterly,75(4):

785-792.

Jen Rinaldi is a doctoral candidate enteringher ourth year in the Critical Disability StudiesProgram at York University.

exposed. Dedication to my studies becomes lessmeaningul when people discover that I haveobsessive tendencies that drive me to nish mywork early and in a meticulous ashion, or anxietyabout being around people that keeps me lockedin my home and strapped to my computer or days.

What have I managed to accomplish here, though,besides exposing mysel and making readersuncomortable? Is there value to this kind osel-disclosure? Do I not belong to the disabilitycommunity until and unless I am outed? Am Inot ully entitled to be a researcher in the eldo disability studies until I situate mysel, publiclymake sense o my commitments and my interestsrelative to my identity, my experiences, myimpairments? There is pressure in disability studiesto sel-identiy; might this constitute an injustice,

this push to expose and diagnose? Is there a placein the eld o disability studies or a researcherwho chooses not to situate her- or himsel,chooses not to sel-identiy as having a disability?Or, does one only earn a place at that table now,and avoid the problems outlined above that theresearcher aces in the eld, by sel-identiying?

ReferencesAlic, Margaret

1986 Hypatias Heritage: A History o Women

in Science rom Antiquity through the

Nineteenth Century. Boston: Beacon Press

Charlton, James I.

1998 Nothing About Us Without Us: Disability

Oppression and Empowerment. Berkeley:

University o Caliornia Press.

Cresswell, John W.2003 Research Design: Qualitative, Quantitative,

and Mixed Methods Approaches, Second Edition.

Thousand Oaks: Sage Publications, Inc.

Gould, Stephan Jay

1996 The Mismeasure o Man. New York: W. W.

Norton & Company, Inc.

Longino, Helen E.

2002 The Fate o Knowledge. New Jersey:29

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Disability Studies Fieldwork_Jen Rinaldi